We’ve learned a lot, but there’s still a ways to go.
AIDS first became known in the early 1981 when clusters of gay men in New York and San Francisco were exhibiting signs of the cancer Kaposi Sarcoma. It was most unusual of cases; the men were all relatively young, between their 20s and mid 40s, an anomaly because, in the US this specific cancer generally affected men in their 50s or older. Doctors were alarmed. What could be causing this cancer among these men, and why is it killing them so quickly? By the end of ‘81, the new disease had killed 121 gay men. In 1982, doctors zeroed in on the link between sexual activity between men and the disease, initially deemed GRID or Gay-related Immune Deficiency. The naming of disease targeted gay people, and disregarded high rate of symptoms found among IUD users from during the same time period. In 1981, Dr. Gerald Friedland, a doctor in the Bronx, noticed Pneumocystis pneumonia beginning to appear among patients who were drug users and likely sharing needles with others. His patients were predominantly Black and other people of color. Meanwhile, at his pediatric clinic, children of known drug users were exhibiting similar symptoms. Likewise, in 1982, non-gay hemophiliacs also had Pneumocystis pneumonia. High numbers of human immunodeficiency virus (or HIV)-like symptoms among hemophiliacs, drug users, and even Haitian people prompted doctors to rename the disease as AIDS (Acquired Immune Deficiency Syndrome).
Due to government inaction, and media reporting, misinformation about HIV/AIDS circulated rapidly, leading to stigmatization of the disease and these four groups of people who were first identified to have contracted it. Racism towards Haitian people escalated, drug prevention programs were defunded, and homosexuality became stigmatized for the next two decades as homophobia dominated the headlines.
Much has changed since the 80s.
We know now that anyone can contract the virus, although like then, Black and gay people are still disporportionally affected by it. We’ve also discovered that after infection, it takes 5-10 years for HIV to develop into AIDS. With this infomation, we know the disease most likely arrived and spread in the US in the early 1970s, long before gay men were dying. And unlike the 1980s, contracting HIV or AIDS is no longer a death sentence. Medications can prolong the lifespans of those living with HIV and can suppress the virus to levels that make it untransmittable to other people. Because of extensive research and existing technology, there are now other means outside of condoms to prevent contracting HIV if you’re negative, or even to “kill” the virus if you’re exposed to it. The most significant but financially and medically unavailable breakthroughs for many resulted in two men who have been “cured” of HIV via bone marrow transplantation. Nonetheless, even with all these recent advances, misinformation about HIV/AIDS continues to run amiss.
Here are 13 facts that debunk the myths, fake news, and erroneous information about HIV/AIDS.
It was a common belief that HIV & AIDS surfaced in 1981, and was caused by a man media outlets dubbed as Patient 0. Media mistook the letter O from Patient O - meaning a patient from outside the country- to be a zero. Patient 0, later identified as Gaeten Dugas, was a French Canadian flight attendant who lived between Los Angeles and Canada. Media falsely reported that Dugas contracted the virus in Africa after being bitten by a monkey. It is likely he contracted the virus after sleeping with a man while in Africa. Because Dugas had slept with men from SF and NYC, the media framed Dugas as the center of the epidemic affecting men in both cities and Los Angeles. Sadly, Dumas was vindicated well after his death, when in 2016, it was proven that HIV and AIDS existed long before the 1980s.
Scientists have determined the first cluster of HIV/AIDS took place in the 1920-30s in Kinshasa, the capital of the Democratic Republic of Congo, Africa. Scientist Nuno Faria, and his colleagues traced the genetic history of HIV through 800 infected people from West Africa. They were able to determine that the variants among the 800 people had one common ancestor that existed no more than one hundred years ago. Scientists were able to pinpoint Kinshasa as the place of origin as the ancestor of HIV because the city contained many transport links that eventually led to its population boom the following two decades. Life expectancy in that region a century ago wasn’t high; people died due to a number of other pre-existing illnesses. As a result, no one had suspected any virus had been spreading.
The earliest known documented death from AIDS is of an African man, specifically a member of the Bantu Tribe, who died in Kinshasa in 1959. His cause of death was not exactly known at the time, he had symptoms similar to sickle cell anemia, and when he passed, doctors kept samples of his blood plasma. Once HIV became more widely known, his preserved samples were later tested for the disease and the results returned as positive.
HIV arrived in the Americas in the 1960s. In the 1940s and 50s, the Congo was owned and controlled by Belgium, a country that discouraged education within its colonies. As a consequence, the Congo found itself without doctors. French-speaking Haiti professionals, many who were doctors, immigrated to the Congo to find or establish careers. When Belgian gave up its colony in the 1960s Haitian immigrants returned to Hait and the virus returned along with them. Scientists later determined through genetic testing that the current dominant strain of HIV prevalent in the West landed in the USA in 1969 and suspect it migrated from Haiti to America.
One other early documented case of AIDS took place in 1969 when a 15 or 16 year old boy named Robert Rayford checked himself into a St. Louis hospital. Doctors treating Rayford found themselves baffled by the types of symptoms Rayford displayed, and by the excessive number of symptoms Rayford suffered from including swelling in his lower body, shortness of breath, and a low immune system. When he passed away in 1969, doctors urged his family to have an autopsy performed. Tissue and blood samples collected from the autopsy were tested in 1987 and were found positive for AIDS.
Doctors were unsure as to how Rayford contracted the virus. His doctors speculated he was abused, or was a child sex worker, or both. They were unable to verify their theories while he was alive, as he always denied a rectal exam, and rarely gave any vital personal information. He also denied being a sex worker, claiming to have had a steady girlfriend. He did eventually reveal that his grandfather experienced similar symptoms before dying, and his grandmother also succumbed to those same symptoms. Both parties were in their 50s.
Little is known about how HIV or AIDS made its way to St. Louis, but because Rayford never left Missouri, many speculated the virus reached St. Louis via its large international airport hub. Unfortunately, the medical community is unable to perform genetic testing on Rayford’s samples to trace its historic lineage because his blood and skin samples were destroyed by Hurricane Katrina in 2005.
A Norwegien sailor named Arne Vidar Roed, codenamed Arvid Noe in medical journalism, is the first confirmed European case of AIDS. Roed traveled around Africa starting in his late teens and early 20s, and died of AIDS-related illnesses at the age of 29. Three months before his death, his third child, an 8-year-old daughter, also died, and later in the same year, his wife died as well. The familiy was survived by their two eldest children who lived long lives. Blood and skin tissue samples from all three who passed were later tested for HIV and returned positive. Genetic testing helped determine his genetic subtype of HIV he contracted, and through tracing, also determined he likely contracted HIV in Cameroon, where that specific strain of HIV is prevalent.
HIV and AIDS can be genetically tested. That is because both have many variants with different RNAs . The two major strains of HIV are HIV-1 andHIV-2. Within both strains there are subgroups (for example:HIV-1, group M; HIV-1, group N; HIV-1, group O; HIV-1, group P). Some subgroups even have their own variants known as subtypes. We’ll get to that later.
HIV-1, group M is responsible for about 90% of all infections. HIV-1, group O is confined to West Africa. It’s the same variant that affects the Cameroon area, and took the life of Arne Roed. Because many HIV strains exist, you can be reinfected. If you are positive with HIV-1 and come into contact with the bodily fluids of someone who has HIV-2, you can potentially contract HIV-2 as well.
Most of the research dedicated towards finding a cure for HIV or developing a vaccine to treat it centers on a strain that causes 13% of worldwide infections. You may be wondering how can this be? Some strain subgroups have their own subtypes. HIV-1, group M consists of subtypes A, B, C, D, F, G, H, J, and K. Yeah, it’s a lot. HIV-1, group M, subtype B is the most common strain of HIV in the Americas, Western Europe, and Australia, and affects 12% of the global infected population. Genetic testing determined that this strain traveled from the Congo, to Haiti, and then to the US. HIV-1, group M, subtype C, however, is behind 50% of the worldwide infected population, but is most prevalent among southern African countries. Capitalistic structures and deep-rooted racism in medical and pharmaceutical fields leaves it unsurprising that, African countries heavily devastated by the AIDS epidemic are also widely neglected in the search for a cure, which brings us to the next point.
Although Black people make up only 12% of the population in the U.S., they account for nearly half of new HIV infections, nearly half of infected people living with HIV, and nearly half of deaths of people living with HIV. Black women make up more than 50% of new diagnosis among women, a rate 14 times higher than white women. Black queer men account for 70% new infections overall.
While there’s a misconception that high HIV rates is a direct result of high risk behaviors, studies have found that this is false; in fact Black people do not engage in more high risk behaviors than others. What Black people suffer from is racial discrimination in healthcare. Black people lack access to medical insurance, or lack access to testing for HIV or other STIs. Contracting STIs heightens one’s chances of contracting HIV. If an group of people do not have the means to get tested or to treat any STIs, they are more likely to fall in a perpetual cycle of contracting HIV. Among Black people, there’s significant disparities in access to HIV related education and culturally relevant HIV prevention education programs. These programs can both inform the Black community about STIs prevention and destigmatize HIV within the Black community. Historically, people with HIV have been denied access to medical insurance as they were prohibited from acquiring insurance due to “pre-existing conditions.” The Affordable Care Act removed this policy, making such denial illegal. As more funds are tunneled into HIV related programs, free testing becomes more readily available, as well as educational programs to spread awareness to destigmatize HIV, and PrEP and PEP are more easily accessible.
Due to the existence of many HIV strains, and because one strain of HIV can mutate fairly quickly to stave off medications, people living with HIV must take a cocktail of multiple drugs known as antiretroviral therapy (ART). The cocktail fights off the various strains, and also slows any mutations of the virus. The HIV medications can be lifesaving for many. Not every person with HIV takes HIV medication, even in the United States where HIV medications are available for most people. This can be for a variety of reasons including trans-exclusive clinicians, racial bias in healthcare, homophobic healthcare options, as well as personal choice.
When taken daily, ART reduces the HIV viral load (or the total amount of the virus) in a person’s bloodstream over time. If an HIV test finds that a person’s viral load has been suppressed to below 50-200 copies per liter of blood (dependent on test type), the test will report the virus as undetectable. A lower viral load due to ART makes it impossible for the HIV test to measure the virus in the bloodstream. This does not imply a person with HIV is cured, and it does not suggest a person should stop their medications, but it does mean that the virus is so heavily suppressed that becomes untransmittable during sexual intercourse because there is not enough HIV in the bloodstream or bodily fluids to pass on during sex.
9. PrEP is an available medication that can prevent the transmission of HIV.
PrEP(pre-exposure prophylaxis) or tenofovir-emtricitabine (Truvada) is a medication used to both prevent HIV acquisition and also to treat HIV in those who are positive for the virus. Tenofovir and emtricitabine block pathways used by HIV to create infection. PrEP can be taken daily or by an “on demand” method named 2-1-1. Transmission of HIV while on PrEP is still possible when the daily or on demand routines are not regimentally followed, or if the person was exposed to a strain resistant to PrEP.
PEP (post-exposure prophylaxis) consists of the HIV medications Tenofovir and emtricitabine, and they are taken with a third HIV drug, raltegravir or dolutegravir, and is generally considered for emergencies. PEP or oPEP was first tested as a HIV prevention measure in the 1980s to treat medical workers who were possibly exposed to HIV. At that time, AZT was used. PEP is taken after coming into contact with HIV. It must be started within 72 hours after exposure to ensure effectiveness. PEP is taken everyday for 28 days. It should not be used to replace safe sex measures like condoms.
Access to PEP varies across the country. Unlike in major cities like New York, PEP is not readily available in many hospitals nationwide. Oftentimes, hospitals have a limited amount of PEP that is exhausted within the first few months of of a year, and in some cases, medical professionals are accused of witholding PEP because they belief PEP encourages “unsafe behavior,” or they save PEP for sexual assault victims. In other instances, PEP might only be available at a clinic or doctor’s office, which can be an issue if PEP is needed during a weekend when clinics and offices tend to be closed. Some states are working toward making PEP available over the counter without a doctors note, but even then, PEP can be unaffordable for the people without insurance.
There are a few people in the world who are resistant to HIV due to a genetic mutation in the cells. HIV requires the enzyme named CCR5 which acts as a cell entry point that allows it to replicate itself. People with the mutation CCR5 delta-32 gene make it impossible for HIV to latch onto their cells and reproduce and are therefore resistant to HIV.
The Berlin Patient, or Timothy Brown was the first person to be “cured” of HIV. Brown, who had late stage leukemia, underwent aggressive chemotherapy to eradicate all his bone marrow. He then had 2 stem cell transplants where he received bone marrow from a donor who was resistant to HIV. Since 2008, after stopping antiviral drugs to treat HIV, doctors could no longer detect HIV in his bloodstream, and thus declaring that Brown was in remission or “functionally cured.” Doctors use the term “in remission” to indicate that the HIV likely still exists within the patient’s system, but that the patient shows no signs of virus. Sadly, Brown passed away from another battle with leukemia in September 2020, but remained in remission until his death.
The stem cell transplant method used for Brown was duplicated again in 2019 to cure a second man, Adam Castillejo, from HIV using stem cells from another HIV resistant donor. He has since stopped antiviral medication and has not had a viral rebound.
Other types of “functional cures” include elite controllers, or those living with untreated HIV and yet, are able to maintain low levels of the virus despite not taking any medications. It is found that within elite controllers, the virus is unable to replicate because it is also locked away in what Loreen Willenberg describes as a DNA Junkyard. Willenberg has lived with long-term HIV since 1992, and has not had to take antivirals to treat HIV.
There are other cases including two newborns who were infected at birth. Immediately after birth, both were given ART for a certain time period, and then upon stopping, were in remission for a few months to a few years. One of those newborns, now a teenager, has been in remission for 12 years, while the other baby’s viral loads reappeared after almost a year of being in remission.
In phase 1 of a trial towards finding an HIV vaccine, scientists have successfully discovered a way to produce BnAbs- broadly neutralizing antibodies- cells that would start the process of generating antibodies against HIV. Scientists were able to isolate and target specific cells and then manipulate them in a way to trigger the production of the BnAbs. The BnAbs would then attach themselves to HIV protein and disable the virus. The clinical trial included 48 healthy adults of which 97% saw the vaccine successfully stimulate the production of the rare immune cells needed to generate antibodies against HIV. The clinical trial is a promising breakthrough towards finding a vaccine for the fast mutating virus and the process can also be utilized to find vaccines for other pathogens like influenza, malaria, and even cancer. Scientists’ next step is harnessing a similar approach to find vaccines for other pathogens and HIV. This technique would replicate the same technique implemented by Katalin Kariko to develop Moderna’s Covid-19 vaccine.
This article was written for FOLX by Devin-Norelle (ze/zim), writer, model, and advocate. You can follow with Devin-Norelle’s work Instagram at @steroidbeyonce.